Living in God's Pocket with ABI

I Want to go Home

Hemmingway bar — Every Drink is on the House

The children’s author, Gordon Korman has a very different take on the title “I Want to go Home”. His take is actually the reverse of what the title suggests. It would be great if that was true for me during a recent trip south.

When the winter here in Canada seems to last too long it’s great to find some reprieve by heading south, even if it’s just for a week. Took a holiday recently in the area made famous by Ernst Hemingway. The area we visited claims to have the best beach in the Caribbean. The weather was sunny andq sand was white covered with an abunqsance of seashells. In addition to that the all inclusive resort provided a wide array of food with many items cooked while you wait and complimented with a wide choice of alcoholic and non-alcoholic drinks.

This is where I found myself in the middle of February. What’s not to like when one can spend a carefree week in a place where almost everything is done for you. No need to make your own breakfast. Room service makes sure you room is clean and supplies fresh towels as needed. No need to wash dishes, stoke the wood stove, bring in firewood or attend to any other regular home chores.

It’s day three of our holiday and all I can think of, “I want to go home”.

No I wasn’t being ungrateful. I wasn’t having a tantrum about not being in a 5 star resort.

Let me explain. As I’ve pointed out, I was probably in the best place I could imagine for creating a memorable and relaxing holiday. Warm water, incredible sea life, spacious accommodations all as part of an ‘all inclusive’ vacation package. But it couldn’t happen.

A Heads Up

The reminder that my occupational therapist gave me a couple years back came to mind. When you are on a holiday, away from home, that is the hardest place to recover from sensory overload. So make sure you have decompressed and shed any sensory loading before you leave home.

I thought I had shed any build up of sensory loading. So how did I get myself into this fix?

Unplanned Sensory Loading Events

We left Canada in the middle of winter so it wasn’t surprising that the 120 km drive to the airport coincided with the arrival of a winter storm, with snow and freezing rain in the mix. To avoid some of the stress related to getting to the airport we left four hours earlier than originally planned. As a result we missed most of the storm during our drive.

During the six hour wait in the airport we watch the departures bill board, noticing one flight after another being cancelled. When over fifty percent of the flights were cancelled we noticed that our flight was still on the board. We kept our fingers crossed hoping our flight would leave as scheduled.The only hiccup before we boarded was a change in the gate number. Nothing serious.

Once we got on the plane we met with some delays. The freezing rain had made the tarmac so icy that the ground personnel would have been better served had they been wearing ice skates. It took about a half hour for the ground crew to push and bump our plane far enough away from the terminal so we could make our way to the runway.

Once our plane pulled away from the terminal we quickly realized that we were not heading to the runway for take off. Instead we spent a half hour getting the plane thoroughly de-iced. The extra half hour delay was very reassuring.

Arrival

We arrived at our resort close to midnight, close to two hours behind schedule. We found ourselves in an unfamiliar place. After waiting in line, with people milling all about, we were assigned our room number. After making two attempts to find our room someone gave us clearer instructions.

While the 28 C is something we were looking forward to, the change is too much to deal with when I’m tired. Unfortunately the air conditioner did not work. On day two we knew they had been working on it because there were tools left in our room. It wasn’t till day three that it was finally fixed.

Day trip

On day three we had planned an off resort excursion. I was looking forward to it. Part way through the day I was beginning to deal with neural fatigue. I was able to manage a couple naps between visiting points of interest. Experiencing fatigue on day three was not a good sign. The fatigue was accompanied by a worsening headache which had already persisted from before we left home. This was very different from my previous two trips south.

Downhill

Over the next few days I was finding it increasingly harder to find the energy to enjoy simple activities. I was sleeping twice a day for an hour or more in addition to a good night’s sleep. Over the next few days I wasn’t seeing any improvement. Getting a mild sunburn on day two added an unnecessary added sensory aggravation.

Being away from familiar surroundings and familiar routines increases my cognitive demands. Anything new and different takes additional mental energy. I tried to keep everything as familiar as possible. I found myself avoiding most of the food that was being offered. Having something familiar like an omelette for breakfast with fresh bread and cheese worked for me. For lunch and supper I kept it safe by having ham or beef on rice with some bread and cheese. I would usually finish the meal with some very familiar ice cream. I just didn’t have the appetite to try new and exotic foods. New flavours, new food textures all add to sensory loading. Even something as simple as yogurt seemed very watered down so I avoided that. It seemed a shame to walk away from all this great food.

I very much enjoyed one exception… bananas, fried with papaya and pineapple, prepared while I waited and then doused with rum.

Longing for Home

I was experiencing sensory overload a couple times a day. The heat bothered me. The white sands made the glare of the sun too intense. The main dining hall was too chaotic. My internal compass would not adjust to what should be north or south. I would see where the sun rose and set but I couldn’t get it to sync with my internal compass.

Being away from home made it very difficult to find something familiar, whether it’s food, familiar routines, familiar faces etc. It’s being in a familiar environment with minimal cognitive demands that could help reduce the sensory loading. By day four the only thing on my mind was, ‘I wanted to go home’.

Reducing Sensory Loading When Traveling

There were several things that I could have done differently to increase the likelihood of a satisfying and energizing holiday.

Ensure that my sensory loading is at a minimum before I leave home. In hindsight I realize I started my holiday with too much sensory loading. Often it’s difficult to know where I am on the scale. On this last trip I was too close to sensory overload or the ‘red zone’ when I headed for the airport
Plan the trip a month or more in advance. Don’t take a last minute travel deal as we did. With reduced mental flexibility I need more time to adjust to new ideas or plans. Last minute changes in plans are particularly difficult.
When booking a flight include VIP services. It is well worth the minor additional cost. I had decided that after my last flight. The VIP service helped avoid or reduce several factors that could push me into sensory overload. The VIP service means quicker check in for luggage. It also includes a quiet place to wait after arriving at the airport. Snacks are served which helps to maintain my energy level. They personally come and get me when it’s time to board the plane, once again avoiding a lengthy line up.
Plan a longer stay. (That’s assuming I leave home with minimal sensory loading.) With a longer stay there is time to acclimatize to changes in routine and environment. As things become familiar the cognitive demands are reduced.
Know who your “go to person” is. When things aren’t in order, such as the A/C not working, it’s good to have it resolved promptly, not 3 days later.

In general I’m usually willing to make do. I’m not quick to lodge a complaint. I don’t expect people to serve me hand and foot when I buy a vacation package. I guess that needs to change. Given my limitations I need to learn to complain loud and hard. Or to put it politely, I must make it a priority to advocate for myself.

Sensory Loading Strategies When you can’t Influence the Setting

Pastor Don: His poor eyesight does not take away from his clear vision

I have recently emerged from several weeks of low energy. I say emerge because it has been like emerging from a tunnel, into a narrow canyon and then on to… a gradual awareness of a bigger and vibrant world.

With my increased level of energy I can count on a greater number of activities to go well without putting me into sensory overload or what I also refer to as entering the ‘red’ zone.

When I woke up I was reasonably assured that the day would flow well.

This being Sunday morning I was looking forward to a time of worship. I had done the needed tasks before heading into town. I had opened up the chicken coop, filled the feeder and collected a few eggs. Before going in for breakfast I cleared the 15 cm of snow that had fallen on the driveway and walkway overnight. (One day too early to call it an April Fool’s snowfall)

The worship service began with the usual announcements and introductions followed by an opening song. Following the official greeting congregants are invited to greet each other (with a holy kiss?). People left their chairs and extend greetings to each other into what quickly became a chaos of chatter and people mingling. A clear contrast to the meditative tone just moments earlier.

Today I managed the greeting chaos surprisingly well given that I usually exit the sanctuary just before this part of the liturgy. I do best to avoid the randomness, the ‘messiness ‘ of the moment, the quick greeting of a half dozen or more people. Having half a dozen social encounters compressed into a 30 to 60 second block of time usually triggers neurologically fatigue. That invariably results in a significant drain on my energy level.

Today, after the chaotic greetings two people entered and eventually managed to be suitably seated in front of me. The handicapped person was being helped by a PSW (personal support worker). I couldn’t help but notice the challenge of getting the person seated aided by the gentle patience and care shown by the PSW.

During the next hymn I found myself experiencing sensory overload. The emotion centre of my brain could not handle the combination of three sensory events in close succession. The loss evident with the handicapped person and the heartfelt care being given by the PSW. The chaotic greetings with its social demands. The music and the lyrics of the song chosen to fit the the lenten season.

By themselves anyone of these elements might have been manageable. When the different sensory events occur in rapid succession the compounding effect put me into sensory overload.

While my recovery from these activities could be relatively quick, having the events happen back to back left me no opportunity for even a brief respite before the next sensory event.

When this happens I am in the habit of leaving the area and going for a short walk. I am usually able to join in again within 5 to 10 minutes.

Can it be different?

I heard recently of a grocery store that offers customers a low sensory shopping experience. The low sensory hour of grocery shopping includes adjustments such as low lighting, no PA announcements, no music and no shopping cart returns.

Could one make worship a low sensory experience? Where would one begin?

One would not want to exclude handicapped people. Being able bodied should not be a prerequisite for being a part of the community. While seeing the loss of potential opportunity in a disabled person is emotionally taxing, seeing the heartfelt care being shown is also emotionally taxing, albeit a positive emotional experience… nevertheless adding significantly to my sensory loading.

While live music and the accompanying lyrics can contribute to emotional loading its untenable to have that eliminated from the liturgy. I find the lenten lyrics along with the music in minor key a combination that hits a bit harder. However, imagine a worship service with the lyrics redacted and no music or singing. That would take the soul out of worship.

Situations and actions which touch the heart has a way of overloading my emotional center.

It is clear that the sensory experiences are an integral part of a worship liturgy. My ongoing challenge is to develop strategies for navigating that hour and a half each Sunday morning.

Strategies:

Arrive refreshed. If possible void sensory loading activities the day before.
Be mindful of which parts of the liturgy present challenges.
Participate in the difficult parts of the liturgy briefly. Over time increase the length of participation. Total avoidance can increase the risk of developing ‘super sensitivity’.
Choose seating that lessens the sensory impact. Choose seating that allows for an inconspicuous exit.
Find space to move around as restlessness is an early signal that I’m approaching sensory overload.

Changes would be unreasonable

At one time I thought it was reasonable for me to request a change. If the worship community would agree to remove the chaotic activity of people doing the 30 to 60 seconds of greeting that would eliminate one problem area for me. Well, one morning a guest minister missed that part of the liturgy. I was relieved while many people were annoyed.

The worship liturgy follows its own course. It’s not reasonable for me to request changes in the liturgy to meet my needs.

Over time I hope my strategies will minimize my sensory loading. I need to accept my own accommodations to properly manage my sensory loading. That will likely mean choosing to limit my participation at times.

How about you?

I would love to hear what strategies others use to manage their sensory loading whether it’s at a structured event or in a casual setting.

Celebrating (Limited) Success

cycle1 — A controlled downhill on a 36″ Unicycle

I recently reached the one year point since defining a baseline. The baseline is a blog posting I composed a year ago. I outlined in general terms where I am in my journey of recovery. Or to state it more accurately, I outlined in general terms the point I was at in my adjustment to living as a neural-atypical person in a neurologically typical world.

The struggle is daily, not that there are set backs every day. It’s that a setback can occur at the most inopportune times. This unpredictability makes it difficult to commit to certain requests for volunteer help in which last minute cancellation creates a problem. It also means, that despite taking measures to minimize my sensory loading before a significant event, something can happen that will very quickly trigger sensory overload. It’s not unusual to be nicely humming along with my day and then find myself struggling seriously ten minutes later.

It’s the unexpected setbacks that makes it hard to recognize progress or improvements. It requires more than simply tracking the amount of time between setbacks. The lack of seeing noticeable improvement can be discouraging to say the least and at times the recurring setbacks brings with it a sense of tiredness from dealing with neural fatigue.

Benchmark as I defined it a year ago

It’s three years and counting since my mTBI (minor traumatic brain injury) and I’m experiencing fewer new successes. I’m gradually realizing that new successes are the greatest inspiration for hope and anticipating further healing. Even if the successes are small.

I long to see improvement in specific areas. I look forward to being able to visit someone who lives a two hour drive away and not arriving exhausted. I look forward to ordering and eating a meal in a restaurant without becoming overwhelmed. I look forward to being able to enjoy larger social gatherings without being mindful of taking regular breaks from the event.

As the time between new successes increases, it’s easy to become discouraged. I risk being pulled down by the predictable situations that remind me too clearly of my limitations;

my brain becoming ‘mush’ one minute of exposure to loud or jarring noise,
my emotional fatigue five minutes into enjoying live music,
my neural fatigue ten minutes into a conversation,
my attention waning fifteen minutes into a presentation,
my restlessness kicking in twenty minutes into an unfocused social gathering.

My limitations have a way of colouring many of my activities, namely cutting them short or ignoring the signals my body gives me and risk needing one, two or more days to recover.

Life-long Learning

A key part of my life has been life long learning. As an educator, learning is part of living. Exploring new areas can be exciting and lead to new insights.

Learning to live with ABI, while exposing me to struggles and disappointments also introduced me to a fascinating new world. Learning from my limitations I’m finding out how truly amazing the human brain is. Learning the nuances of my injury, the apparent ambiguities of what seemed to work one time and not the next time. The learning ran much deeper than academic learning. The learning was real and poignant. I was living it. The things I learned about brain injury were being understood at a visceral level.

Initially when I would experience limitations, there was some disappointment but it was balanced by the fascination of recognizing another nuance to my limitations. Gradually I’m learning what my changed ability and activity profile looks like.

Plateauing

At this stage of coming to terms with my ABI (acquired brain injury) it is easy to become discouraged. I’m often left wondering when I experience a particular setback whether that is one that becomes part of my ‘permanent limitation’ list.

The thrill of learning something new and amazing is now being more often replaced by acknowledging a growing ‘permanent limitation’ list.

New Focus

One antidote to the discouragement that threatens to invade my space is to set some goals. The hard work of understanding my healing process needs to be gradually replaced with getting on with life.

Three years and counting, living with ABI, certain activities no longer need to be planned in detail. The transition from pre-ABI has been worked out for many common activities.

One example of a living with a new routine is making a trip of more than an hour. My wife and I no longer need to plan where or how often we need to make a pit stop. We don’t need to discuss who will drive which stretch of the trip. We know the drill.

No longer having to carefully plan each significant activity in detail with possible ‘off ramps’ depending on my level of endurance makes it easier to engage in a greater number of activities.

Initially my memory and ability to problem solve were two significant factors that created its own complications. The two abilities that were most in demand in helping me adjust to a new reality were also unfortunately most compromised by the injury. This invariably creates a ‘catch 22’ situation.

The “Don’t Do” List

Recently I was asked if there are any activities I don’t do any more. I found it hard to answer the question. I can give a long list of activities I do in a modified way or carry out within a narrower scope. In fact, most activities end up on my ‘modified list. Exceptions show up in the physical domain. Activities that are mainly physical in nature requiring minimal to moderate cognitive engagement generally go well. That’s assuming there isn’t an unexpected setback.

So, what don’t I do any more?

1. No more parades. Too loud and too hectic.

2. No live concerts

3. I don’t ride a 36″ unicycle any more. Oh, but I still ride a 26″ unicycle so that belongs on the modified list.

So, the “Don’t Do” list of activities is rather short. Thankfully. The list of modified activities is rather long. Thankfully I can still do them even if it’s of a ‘part-time’ nature.

It’s the ‘part-time’ nature of so many activities that is bittersweet. Each of those activities is a not so subtle reminder of loss. The activities have not faded into the distant past.

And Now One Year Later

It was a year ago that I drafted the above observations. As I reread it I recognize some encouraging changes. For one, I attended a live concert a few months ago. While it’s no longer on my ‘Don’t Do’ list, it definitely requires some careful modifications, particularly if I want to take in the full experience.

In general my modified activities have shown improvement. My endurance for most activities have increased. Some of the improvement is a result of being better at anticipating the demands of the activity, taking breaks at more opportune times. It also helps that my resilience has improved for some activities.

I am still hoping to one day cruise around town on my 36″ unicycle. Wishful thinking? Maybe. But for now it’s parked in the garage, ready for when I’m ready.